What Prostate Cancer Can Mean to a Man; One Guy's Advice to Companions
by Robert Young, Webmaster, Phoenix5

Being diagnosed with cancer is bad enough but prostate cancer carries more than just a threat to one's life.

To a man, it can carry a threat to his identity and value as a man and this can effect not only his behavior but his relationships.

Phoenix5 was created shortly after my own diagnosis on 11/23/99 because I felt that my treatment (hormone therapy) was stripping me of my identity as a man and I wanted to find help with that issue and I could not find the information that I needed.

A few months later, I came to realize that I had made the disease my
problem and had been excluding my companion, Caren. I had disregarded how my illness and the effects of the treatment effected her and this was reflected even in the content and emphasis of Phoenix5.

That was when and why this section was created, to try to help the companions of the men with prostate cancer.

Granted I am just a guy, but, hopefully, this section will offer some help.

THE FIRST THING TO KNOW

Before giving my views, remember that each man and each relationship is different. In that relationship, you will face basically two emotional issues: yours and his and they are not the same. The burden that each of you carries is different.

Then there are the issues of treatment and recovery. This section. however, deals the emotional issues.

On the Companions Menu there is a resources box. One of the items is the Circle Mail List. Many companions of PCa men subscribe to it and it is an excellent resource for seeking support and advice from other women.

Some advice might work. Some might not. But knowing that there are others who face the same problem will be of help.

SOME ADVICE ABOUT MEN WITH PCA

Given the above disclaimer, here is some general advice about men who face prostate cancer.

Their first problem is the cancer and what to do about it. Unlike women, many men don't know their internal, sexual anatomy. Few will even know where the prostate is and what it does, let alone what to do about the cancer. So the first order of business is education.

The problem is that too many men don't, won't or can't be educated on the issue so it may fall to you. That is where you really have to play it by ear and use everything you know about him and your relationship.

This is complicated by the emotional stress of the diagnosis itself. You will not be able to study material in a detached fashion. You (and he) may feel frightened and rushed and this is not conducive to education.

Additionally, regardless of what he knows about prostate cancer, he knows it has something to do with his sexual system and his (as well as your) ease or difficulty in talking about sexuality may come into play. So the chances are that this is not going to be an easy issue to deal with. He could go into angry or silent denial and become moody and you could become frightened and meanwhile, someone is talking about treatment options. That can be a bit much.

Finally, I've been told that the emotional effect of prostate cancer to a man is not unlike breast cancer (or uterine cancer) to a woman. She may feel like the potential loss of a breast (or her uterus) will lessen her as a woman, so you may want to draw your understanding of his situation from that parallel.

THINGS TO DO

Talk About It

With the diagnosis and the need for some decisions, your lives have changed and will never be the same again. Unless you have the sort of relationship that can easily and honestly integrate this disease into your routine (and there are few of those), you need to talk about it.

This does not mean making treatment choices -- that comes later -- but seeing if you can reach, touch or discuss the emotional issues that will hit first. Unfortunately, too many couples cannot deal with emotional issues, let alone this diagnosis, but the longer these are left untouched, the more they will effect your relationship.

Don't try to make treatment decisions until later, if only a day or two. You have time and it may be the most important time you spend with this disease.

Lay Some Ground Rules

This may have to be done before talking about it, believe it or not.

By Lay Some Ground Rules, I mean something akin to Robert's Rules of Order, the procedure that most US committees or groups follow. For example, you might agree that on some key request phrase, one of you gets to discharge your grief, upset or fears and the other has to be there for it.

Maybe you need to set a time limit or procedure to follow and then do your best to follow it. Otherwise, a bout of grief, anger, fear and/or denial can turn into a bitter, painful and divisive dispute. You need ground rules that either of you can call on to avoid these divisions.

You also need a way to call for a review of the ground rules, to implement new ones or to change old ones.

Don't kid yourselves. Recognize that your relationship may be tested and stressed to the max, possibly worse than any other volatile issue to date. Set a way to possibly identify those moments, perhaps to call a time out or just take a break because without your partnership in this, it will only get worse.

Do these things before you make any treatment or financial decisions.

Make An Education Decision

If you are like most couples, you know nothing about prostate cancer and, with the diagnosis, you may have already been exposed to cryptic words and phrases. Don't worry about it now. It may seem that have have to immediately deal with those words but first you have to regain your wits and composure. When you do, you have to start your education, which will be part of your ground rules. For example, who will gather the information? One of your or both? What should you gather and in what format? (Books? Internet sites?) How will it be exchanged with the other?

Even if you feel you know something about prostate cancer, you need to start all over because it will now look and sound differently. And, unless you want to turn it all over to the professionals -- like going to a car dealer and saying, "Sell me a car" -- you need to get educated.

I have some resources at the end of this essay.

Establish a Division of Labor

Use your need to get educated to establish who will do what. Maybe one of you will prowl the Net or join a mailing list and another will go to the bookstore. Or maybe agree that the companion will be the note-taker on trips to the doctor.

Knowing the role each of you have will give some certainty and stability. It is also a good way to keep talking about how you will face the disease.

In that vein, this is a good time to mention support groups. They can be of value for they are composed of people in your situation. Discuss finding and going to one and see if he is willing. If he is too embarrassed to go, talk about it. Perhaps you can go alone and tell him what you found.

All of these are ways to start meeting the disease as a partnership, as early as possible.

THINGS TO REMEMBER

It Can Be Confusing & Frightening

How many couples happily start a research project together (whether for a new home or a vacation) that ends up in confusion and maybe an argument?

Prostate cancer can be worse because, besides the diagnosis, you will now come across information that is frightening. You may stumble across one horror story after the other but you have to remember, this is not like choosing your vacation. You are studying a disease that kills in order to find a way to avoid or beat it and the thing that will stick with you most -- until you get your wits around it -- is the bad news.

Others Have Been There

Never feel stupid. No one is born with a knowledge of this disease. Every person, unless they were an oncologist, had to learn the language and the ropes.

That is where support comes in, such as the Circle mail list. These lists are filled with people who went through the same confusion and fear and they might have advice. They will certainly understand, which can help.

Just know that you are not the first to be diagnosed and that the Internet now provides access to more support than ever before. Learn to use it.

But also remember that there is a lot of bad advice out there or people who are so bitter that their views are tainted or they might be trying to sell you something. All that means is to take your time. Don't let panic dictate your decisions.

There May Be More At Stake Than Cancer

I cannot over-emphasize how some men are deeply and profoundly effected by the prospect (or fact) of losing their potency and/or continency (bladder control), which can happen with many treatments. Sometimes this is unspoken or it simply may not register until later.

I am not trying to say it will happen but it can be, in my opinion, one of the most difficult and dangerous points for the relationship, which is why I bring it up. Three years later, I think there is still inadequate help in this area.

The possible severity of a man's reaction will puzzle many companions as they try to reassure the man that (especially) sexual intimacy is not that important, which misses the point and can make it only worse because it is important to the man. In fact, it may seem more important to him than his life.

Call this bizarre, illogical or even insane but it happened to me and in my three years on several lists, I have seen it in too many other men, usually via the pleas of woman who encounter this attitude. Sometimes such men will not accept any help or reassurance, for we are a stubborn gender. But, in my experience, the best thing for the companion to do is not to reassure the man that it really doesn't matter but to show him by trying to understand. The prospect or the fact of impotency and/or incontinence may have hurt him more deeply than even he can grasp and, more than ever, he needs someone to listen and understand.

Drawing on that parallel of prostate and breast or uterine cancer, maybe you could talk to a woman friend who has gone through the disease and find what she needed and what helped her and then extrapolate what is valuable to help your man.

I sank into that black hole. I didn't even believe that my Caren could grasp what I was going through, for I certainly didn't understand it. Don't make that mistake. Start your partnership early for it will be up to the two of you to resolve it, even if it needs professional help or that of a friend.

SOME FINAL ADVICE

Some may object to this remark of mine but women learn to nurture and carry the emotional burdens of an relationship that most men don't see. Being worried about your man and striving to help him will put an even greater burden on you that you might not want to place on him. For that reason, it is crucial that

1. You take care of your own health, including getting rest when you can.

2. Find an outlet for your burden. This may be a close friend or close family member or merely through a mailing list but you need a place to dump your worries and concerns that you don't want to place on him.

Such an outlet is good for temporary relief but don't make it a lifestyle, to the exclusion of your man, for the two of you need to face the disease together. He needs to learn of your burdens and worries and learn how to help you.

And be prepared that not everyone wants to hear about your situation. Cancer frightens people and you may find some friends balking or acting strange when you try to talk to them and even drifting away. So make sure the person(s) you speak with about your situation can really handle what you are going to say. That is why support groups are valuable. They are composed of people who already share the problem.

In the end, keep in mind that this disease often exposes every weakness and strength in every relationship: marital, family and personal. You will have to change your life but, done right, it can be changed to the better.